my son had a comprehensive neuropsychological examination, and the preliminary results show auditory processing in the single digit percentile.
i understand that this can be low in many neuro-tbd patients, however, this number is much lower than normally seen. the neuropsychologist suggests a comprehensive audiologist's exam to see if there isn't an actual hearing problem, or neuro-auditory problem.
has anyone dealt with this? a reference in ny?
i have him scheduled for with one specialist in nyc, but no available appt. until january. may have to go to the ny eye and ear infirmary clinic to expidite this. i am wondering if such a low score is cause for an urgent evaluation.
-- I know nothing about audiology, nor what they can ascertain or recommend.
mo
[ 11. January 2009, 03:14 PM: Message edited by: Mo ]
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
woah, i'm really striking out with my questions here lately...
anybody know anything about this, or have experiences?
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Hey Mo Sorry - There is actually a Audiologist who posts here - but I can't remember who it is - I'll try to find her for you. -p
Posts: 641 | From So. CA | Registered: May 2008
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What aspect of auditory processing are they referring to?
Can your son discriminate differences between letter sounds (like b/v th/f, etc.)?
Does your son have a delay in processing what he just heard immediately so that he misses what is being said next?
Does your son have difficulty remembering multi-step instructions?
If it is caused by actual hearing loss, that can be remedied with sound enhancement devices in school or in his ear.
If he has an auditory processing problem, it might be a learning issue that must be addressed in other ways.
Hope some of this helps! I live in the NYC area and know some ear people and learning specialists from back when I taught. Let me know how things proceed.
Best regards,
wiserforit
Posts: 273 | From Banks of the Hudson | Registered: Nov 2008
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posted
Hey MO - I tried to PM you - but your mail box is full. -p
Posts: 641 | From So. CA | Registered: May 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Hey Mo, good to see you, sorry for the reason. I do have auditory processing problems myself, but not as severe as your son's.
I have found I do better when I am not in a room where other things are going on to distract me. Also the more fatigued I am, the worse my problems.
I often have trouble taking notes when someone is speaking. I have to rely on peeking over others' shoulders to keep up.
Will have to mention this to my DIL who is former speech pathologist.
Speech and language specialist from school where I taught would also have good suggestions, after over 30 years in the field. Don't have her email addy at the moment.
I happen to be in NYC right now. Will have to get together another time when I have more leeway to visit people.
Sending you hugs!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Hi Mo- before my Lyme Life I worked as a speech language pathologist (SLP)and minored in audiology in grad school
Anyway, I agree that with any significant auditory pocessing issues a comprehensive audiological exam is warranted - Jan doesn't seem to far away to me, but again, I don't know all the details of your son's case....maybe you could ask to be put on a cancellation list or something?
I am 5 years out of the SLP field, so I am a little rusty, but if you have any specific ?s please feel free to PM me. Also, my best friend is still an SLP and currently works with pediatrics so I would be happy to ask her anything for you I feel I can't answer myself...
I have had Lyme (undiagnosed) since childhood and definitely had/have some auditory processing issues myself which I learned to compensate for.
all the best, Abby
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Just remembered the Geneal is also a Speech and Language person. She might be able to help you out.
I agree that being put on a cancellation list might help you move up, especially at this time of year.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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mailbox is full, i haven't checked it in a while. i'll clean it out.
thank you for your responses. as a general answer to what we know, wiser - basically all three of those things you mention are up for eval, at this point it was the portion of neuropsych testing for auditory processing that is so low and needs to be evaluated as to each potential cause so we can know if it is hearing from within the ear or more in the brain "hearing receptor" area.
it may be both, because auditory processing was low in the past, and there are significant executive management/functioning issues that this may play a bigger role in than we realized.
the need is urgent, but the specialists who can perform the kind of eval you all mention are few and far between. i've checked around and the concensus of advise so far is to keep the january appt. with the recommended specialist in nyc and try for cancellations as well.
more later, and thanks for the assistance.
mo
[ 09. December 2008, 04:10 PM: Message edited by: Mo ]
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
hshbmom - yes, feel free to forward my email. thanks.
m
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Mo, my daughter hasn't had any hearing evals..But she is nervous and jerky when around a lot of people that are talking. So I suspect she also has a processing error.
Our support leader now has a hearing aid and can't deal with a lot of different people talking at the same time or noise pollution...lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I sent a message to Geneal. ...just referred her to this post since I couldn't find your address right now.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
we had the auditory processing eval at an nyu affiliated facility, a great specialist who acknowledges lyme encephalopathy - who performed a most comprehensive auditory evaluation which differentiated between a hearing problem and a "neuro-hearing" problem. (the way sounds bounce off of neuro-receptors within the brain.)
low auditory processing is common in lyme patients with brain involvement, but my son's scores are severely low.
the exam ruled out a hearing problem, and diagnosed an extremely severe auditory processing disorder. hearing is fine without any background noise, but in the area of competing sounds, competing words he is scoring in teens and single digits, and with competing sentences (any situation where more than one person is speaking) he scored in the 1st percentile.
that means 99 percent of people can hear better than he if more than one person is speaking.
he cannot process what he hears, it sounds like jibberish.
that explains allot of the behavioral disorders and confusion, which tend to occur in noisy situations. this is documented in the report as a disorder based in neurological disease.
LL experts say tbd treatment could alleviate this disorder, but in the meantime there is nothing much to do except a rather cumbersome device that may help in certain situations, but mainly we need to modify settings to accommodate this disability.
he has neuropsychological findings in other areas that are significant, and a very high IQ, vocabulary, abstract reasoning and other great strengths.
meanwhile, he has been clinically accepted into two brain injury programs based on lyme disease as his original acquired brain injury, but neither funding source will agree as of yet. (one program is funded by insurance, the other is a school placement - must be referred by the CSE - yea, right).
so -- in order to keep him safe he has been forced to endure repeated psychiatric hospitalizations - where his disorder is not supported, is actually aggravated, and no real healing is possible. (it is very loud and allot of folks talking at once in that environment, not to mention no neurological disease support what-so-ever)
he remains on tbd treatment, which is helping but very slow going.
he is on lithium, ambien, and lexapro.
at this point, we are struggling to put together an out-patient program with neuropsychological, audiological, LLMD, LLpsychiatric and PT programming to support the brain injury.
the last time i reported on my son, a member had the audacity to claim he should have had more support in earlier years.
i must state that he has had comprehensive medical and psychiatric tbd literate support for six years. he is now a teenager, had severe damage as a young boy, was re-infected, and suffers from co-contributing factors which are common in teens and young adults.
he remains at great risk, we have gotten all possible help and evals we can find - we secured acceptance into brain injury programs which is a huge leap in advocacy for a tbd patient - and now the beurocracy of payors red tape issues leaves him without the care he needs.
we continue to pray and fight. he remains in great danger.
thanks to anyone who can give info on the auditory processing disorder piece.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
thanks very much for the kind wishes, peedie.
mo
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Hi ((((Mo))))
haven't checked in with you for awhile...guess the funding thing is still the sticking point. Don't know what I could do to help but want to keep in touch.
If there's anything I can do please let me know. Charlie
I'm so glad you got some answers, even though those answers are very difficult ones.
You are so smart on your take on the situation. You have to deal with the symptoms as they come while treating the tbds.
Sometimes Lyme & tbds are so all-encompassing that they overshadow the imperative to function despite them as a part of just plain living. Daily push, no matter how limited, is an affirmation that we are not defined by this darn illness. You are strong mom to keep it present.
I'm happy for you that you got such thorough results. It sounds like your son has gone through much and this may help to "demystify" some of the struggle for him.
For a young man who has "very high IQ, vocabulary, abstract reasoning and other great strengths" it must have felt baffling and defeating to have this neuro-area short-sheeting him. It's so important that he be helped to recognize that his strengths can be harnessed (with the help of experts) to counter the weaknesses.
Good work, Mo-mom, you are really helping your son significantly with this step. I'm sure there have been many leading up to it. Nonetheless, you deserve high-fives on this!
I am thinking about you guys and saying prayers and blessings.
Best,
wiserforit2
Posts: 273 | From Banks of the Hudson | Registered: Nov 2008
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lymednva
Frequent Contributor (1K+ posts)
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posted
We've been wondering about you and him in chat, so thanks for the update.
I can really relate to his problems, as I have them myself, but they are no longer as severe as his. It is quite frustrating not being able to filter out background noise.
Hope that you are able to work out the logistics for getting him the help he needs and the break you need from all this.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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i just got back to this post. this encouragement means allot. this has been a very rough road.
at this point, along with the above he is still in a very precarious position as far as functioning, life, school - all of it.
has been accepted into two brain injury rehab programs, both acknowledging lyme as the origional insult, both devising comprehensive treatment plans honoring all the LL data. one is funded by insurance, which issued an initial denial for funding that could be appealed, the other funded by the school district - oh goodie.
now in addition to the SPECTs, psychiatric data and other evals, and the audiologist report we have a neuro-psych eval from doc L.Sh. - significant neuro-cog, neuro-behavioral, somatic, processing disorders.
gifted intelligence.
the neuro-rehab programs that is funded by the school district (with whom we have a long and unpleasant history) has a limited time to offer an available bed (basically, just a couple of weeks).
not expecting them to fund the program, but praying something finally gives here -- we have the best shot we can get with state big wigs backing PRIOR TO going to the school. this will be some meeting.
will go to the cse with all of these new reports and letters from 3-4 docs stating he requires the programming immediately, plus all the hospitalization data, evals and treatment info. with school's "bosses" patching in.
here's hoping my son gets what he needs to transition through this time and stay on treatment (which is helping, but very slowly).
mo
[ 11. January 2009, 04:17 PM: Message edited by: Mo ]
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Mo, thanks for the update. I hope the meetings, etc. go well for you and ultimately for him.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Good to hear from you Mo. It looks like all of your hard work finally got notice and your son will get the attention he needs. Very Best Wishes and prayers for you and your son. -p
Posts: 641 | From So. CA | Registered: May 2008
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we are talking about a school district here, tho, and a program that is necessary to his safety, that costs quite allot. beurocracy bites.
has he gotten all of the data and proof he needs? absolutely, five times over.
will they do the right thing? not likely.
still need somewhat of a miracle here, which shouldn't be the case at all. it's unbelievable that appropriate treatment for such a serious condition is so hard to get, which is why he is in the position he is in in the first place.
m
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Mo, I'll pray for the miracle.
I've just finished reading "Head Cases", written by a man who advocates for people with traumatic brain injury.
Going by what he says -- and he talks a lot about the incredible sacrifice an perseverance that families -- moms in particular -- go through to get help for their TBI children -- what you've achieved so far is phenomenal. The odds are so stacked against success in getting any kind of evaluation or help.
It's so wrong, it's hard to think of anything wronger.
You're in my thoughts.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
mo-i'm glad things are a little better.
the son i fought that district for is now 34. fighting them nearly broke both of us so i walked away and moved to another district. i can't believe they are still not doing their job.
i don't know how you do it...
prayers to you.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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With any issue as complicated as what your son has going on, you will have to advocate hard and fight for everyday services all the time.
I suggest you get an accordian file folder to keep all the pertinent records (with plenty of room to add on). Think of it as your brief case and copy every practitioner with the whole package.
It makes sense to carry several copies of all the testing. You can hand them out quickly and show folks that you mean business.
I write cover letters with a mini-Table-of-Contents for the attached packet. Update the letter with the names of everyone who has submitted reports.
There is little transition communication between sources unless you provide and insist upon the link. You probably already are doing this, so I apologize for stating anything you already know!
Best wishes and regards,
wiserforit2
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